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Here are more P2P emails that were produced to me after I won my IOM FOIA lawsuit. Today’s documents are NIH and AHRQ emails relating to inquiries from the public regarding the ME/CFS P2P program and the “TPs,” the talking points NIH developed as a canned response to any—and I mean any—inquiry regarding the program, regardless of whether the talking points were actually responsive. Please keep in mind that NIH’s P2P document production in response to my FOIA request is in violation of FOIA in numerous respects (e.g., regarding exemptions claimed) and that, based on the agency’s past behavior, there are likely documents regarding the talking points and public inquiries that have not been produced or that have been “misplaced.”

This batch of emails starts with somebody within the agency—clearly entirely unfamiliar with the agency’s P2P (then EbMW) program—consulting the patient forum, “ME/CFS Forums,” to educate him or herself (page 2):

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If I were well….I would use all my strength to make the world a better place.

I know this sounds like a beauty pageant answer but I mean it. I think I would love to go into social care or work in an old folks home or in some way help and make a difference in the lives of those who are so vulnerable but have seen and done so much over the years that they deserve peace in their twilight years.

When I was nursing I loved geriatric nursing…it was challenging but the most rewarding of all to me. Part of me wishes I had carried on my career but I left very early to spend time with my husband Clive, who was newly paraplegic…I never went back and I am actually glad because who knew illness would strike me too.

Imagine if I hadn’t had that decade or so of pure fun, laughs and 24/7 with the man of my dreams…I would have been full of regret now. I am thankful for those years. they see me through the bad times now,

But oh how I wish I had purpose and the energy to be productive. If I were well is something I think of often. I have so much to give and so little ability to give it. I try my hardest with sharing and trying to raise awareness of issues that are really beyond my control but hoping that by sharing someone out there is able to change the wrongs to rights.

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I’ve been following Ernest and Maggie’s story these past few years.
Hopefully we all grow old and when we do we want nothing but respect, peace, comfort and the love of those dearest to us. Maggie and Ernest were robbed of this. Please help him to get justice for the love of his life. Thank you.x

For purposes of protection of the individual, names have to be excluded until Justice has been done.

Imagine achieving over 50 years of marriage, and not being able to celebrate it with you’re loved One. Imagine being separated and banned from seeing your soul mate by a care home until they die. Threatened in the secret family courts with no legal representation and to be arrested if you show up, have your assets seized and threatened with imprisonment. Not only this but not being able to understand or communicate with the “people” providing this so called professional public service. Unfortunately this is the true story of Ernest John Coles, and his beloved wife Maggie who ended up in a nursing home with apparent dementia. Ernest is an 85 year old partially deaf illiterate pensioner up against a multi-million pound profit making charity one of the leading care providers in Britain…

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I know we can’t solve the world on our own…I know that there is SO much happening that is shocking/disturbing and dare I say evil and that no-one can take on everything or fight it by themselves and that it is so overwhelming, but we can collectively end some if not all of the wrongs by being vocal.

By sharing and by not allowing what either individuals or Governments do to hide in the shadows or allowing them to think it’s OK to do in broad daylight. By speaking out and sharing and being vocal we let them know it’s NOT OK and that we are watching and that we will not allow it to go on in our name or without us saying it’s wrong.

Please for the sake of all humanity and all that is good and there is so so… SO much good in our world please keep using the voice that was given to you and speaking out against whatever strikes you as wrong. It might be fracking, or mistreatment of children, women, men, animals or our planet as a whole. It might be how the Government is abusing their power of the people or you may feel really strongly about illegal wars.

Whatever it is and for me it’s all the above…then speak out, use social media to it’s full potential and if you want to share pictures of kittens along the way or talk about a new nail polish or how much fun you had at the pub last night or how fed up you are being so sick…always remember that your voice matters and that you must use it or we really are lost guys…it needs us all to be involved to change our world and make it beautiful again for everyone…not just for us lucky ones. Because believe me we are lucky…we have a voice…so many don’t

For today do this one thing…help prevent this man from entering the UK with his vile outlook on life and his desire to profit from impressionable young men. Thank you.

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As the child sex abuse inquiry starts to take soundings from survivors a very serious development has happened for those who hoped to keep the Westminster paedophile ring dead and buried forever.

A brave survivor who has never talked to the police decided to take his courage in his hands and talk to the Met about his horrendous experiences in Dolphin Square where sexual abuse of young boys is alleged to have been combined with sadistic practices.

The survivor who has been given the name ” Nick” to protect his identity. The full story by my colleagues on Exaro was published last weekend in both the Sunday People. You can both read it in full and hear an interview with him by editor Mark Watts and my colleague Mark Conrad on the Exaro website.

Suffice to say they have been rumours of dark events at Dolphin Square, used for years…

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Carole

I am an eclectic contradiction.
A shy yet open woman.
A free spirit following the rules.
A homebody with wanderlust.
A realist who believes in all things magical.
A down to earth avid dreamer.
A town-born country girl.
A child with an old soul.

This blog is my story about a life forever changed by chronic illness. I hope you'll laugh and cry with me as I try to make sense of it all. Oh, and nothing I say should ever be construed as offering medical or legal advice.